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What Would #ThisNurse Say? Risky Business: Unilateral DNR by Diagnosis

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRNOpened First Aid Kit.JPGShe was gone, and we knew it. Her heart was just too sick and just too tired to benefit from the chest compressions we had started moments ago. We knew the code would bring only trauma to her failing body, but she was so young, and we had already done so much, and this is what she wanted.  Besides, we loved her.

With code bell blaring, our attending for the night – young, too, but healthy – ran to the head of the bed to intubate. Shaking hands barely wrapped in the first gloves she could find, she pried open her blood-filled mouth. We tried to clear this blood that poured – blood full of disease and fear, blood accidentally infected at birth.

Thumping, splashing, yelling – the violence of the code sent red waves of grief over us as we worked. Somehow, someone tied masks on our faces long after our grim care began – we spent no moments thinking of risk, speeding forward for the life we so desperately wanted to save.

In health care, whether we love our patients or not, we daily risk our health on their behalf. We risk needle sticks, violence, and the impervious chance of infectious spread. Ebola brought this risk into the view of American media, but its spotlight simply illuminates the daily chances we take to care under the shadow of HIV, Hepatitis or even pneumonia. The American Nurses Association, and state boards of nursing, clearly state that our ethical duty as nurses comes irrespective to patient diagnosis. Besides, I don’t know a single provider that would sit back or deny care to a patient in life-saving need.

But in a strange little article, tucked deep within the New York Times Tuesday Science section this week, Lawrence K. Altman writes of a New York City bioethicist’s industry-wide call to withhold cardiopulmonary resuscitation (CPR)  and resuscitative care, to those diagnosed with Ebola. The week’s Ebola news lessened since the prior’s media frenzy, but this piece – viewed against the backdrop of the Dallas transmissions, a persistently raging epidemic in Africa, and CDC squabbles – snuck in as a puzzling commentary, one that should not sit void of nursing voice.

Altman discusses the statement bioethicist, Dr. Joseph J. Fins, of New York Presbyterian Hospital Weill-Cornell, made on the Hastings Center’s website last week. According to Fins, Ebola poses far too much risk for health care providers performing CPR, and because of the extensive PPE application required, patients requiring CPR may suffer extensive brain damage by the time providers are prepared to initiate it. Considering this, Fins states, “Unilateral do-not-resuscitate orders would seem justifiable under these circumstances, if surrogates do not otherwise agree to a DNR order.” While the article and bioethicist argument expose a gap in current medical conversation about Ebola treatment in light of resuscitation, neither makes efforts to consider the personal experience of providers – particularly nurses – instructed to withhold potentially life-saving care.

A nurse’s voice is vital here. As we saw through the infected nurses in Dallas, and through the subsequent media debate about Ebola care and PPE needs, nurses are in the forefront of care – and should likewise be in the forefront of policy creation. In my opinion, there are two important missed opportunities for nurse voice in this article – a discussion of the very frequent nature of risky, and often futile CPR care given to patients infected with common diseases such as HIV and Hepatitis, and a personal telling of the potential moral distress from withholding care on a deserving patient, regardless of risk to providers.

While Fins’ arguments prove logically valid, and in his Hasting’s Center statement, he makes them with great deliberation, Altman’s article for The Times speaks very little about the fact that we often provide aggressive, full-court press care to high-risk, medically futile patients every day. These patients – like the Ebola patients Fins’ suggests would benefit little with CPR – often have little or no prognosis for recovering from CPR, an intervention that is sometimes misunderstood by patients.  National facts mirror our overtreatment and misinterpretation of CPR at end of life – even though 80% of people with chronic illness say they’d rather avoid the hospital when dying, half of Americans breathe their last breaths as inpatients, undergoing care that is often not intended for cure. Whether this daily care is futile or not, to broadly limit resuscitation based on a single diagnosis – Ebola – should not come without an interdisciplinary discussion of the realities of current practice, and the possibility for great ethical dilemma when singling out a diagnosis.

A nurse’s voice in this article might call attention to our history of embracing risk to care for populations with grave illness, but could also highlight the personal side of resuscitation care. To watch a patient die while believing that your care might prevent, or at least attempt to prevent death, is a narrative that cannot be left out from this discussion. A nurse might speak about health care providers’ inability to turn off our ingrained call to beneficence simply based on diagnosis. And a nurse bioethicist should call attention to the extensive research that surrounds the subject of moral distress – knowing the right thing to do, and being kept from doing it – and the benefits of moral courage, especially in situations of high risk.

Barring providers from performing CPR may protect from the danger of Ebola infection, but it could expose us to the trauma of withholding care. As active participants in CPR care, a nurse voice is needed here – to solve the dilemma of Ebola care, but also to champion the critical conversation about our daily interactions with risk and futility.

She died shortly after we found her breathing tube and filled it with our own plastic substitute. Blood on her face, on her neck, on the bed. Dark blood, like molasses spilled. Her mother told us to quit the physical work of the code, her sister told us to leave the tube in her mouth, and her father told us they’d wait for her heart to slow and stop itself. We had paused the inevitable, we had worked, we had fought – all of us leaving, stained from the inside, out. Passing a bottle of hydrogen peroxide between us, our minds stayed close to the heart of her life, far from our cleansing ritual.

Unseen Gap in Health Care Access

Kamil Fulwood Spagnoli

Kamil Fulwood Spagnoli

This post is written by Kamil Fulwood Spagnoli, a new Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health.  Her full bio is here.

Unseen Gap in Health Care Access

Over the past decade, there has been debate over how to provide increased access to health care. We all heard the fanfare about the Affordable Care Act and the national conversation that explored its benefits and shortcomings. This law has made it easier for people with preexisting conditions to receive coverage and has allowed Americans to purchase insurance through federal and state exchanges. 

The intent of the Affordable Care Act was to move toward universal access but the disabled still face being excluded from the health care system. There was much vitriol and acrimony during the debate about health care reform. Opponents of the proposed changes countered each proposal with arguments why the reforms would be destructive. In other words, there was a robust discussion. 

Exclusion of the disabled was never among the opponents’ counter arguments. 

How the Disabled’s Access to Health Care is Dwindling

According to the US Census Bureau, 1 in 5 Americans has some form of a disability. In the 2012 National Health Interview Survey, 20.6 million Americans were identified as having vision loss. The survey also found that the visually impaired have access to technology at an alarmingly low rate.  Over 1.5 million people, 15 years of age and older with limitation in seeing, reported having access to the Internet. Almost 1 million said they use a computer regularly. Of those, about 196,000 people have a severe limitation in seeing and have access to the Internet. 

Unintended Effects of Efficiency 

Increasingly, health care is following the trend toward exclusive access through technology−from using electronic health records to scheduling appointments over the Internet. What these statistics show us is that as the industry adapts to business models that rely on the Internet to manage and deliver health care, the visually impaired may be excluded from readily available information about their illness, symptoms and treatment options and health prevention. 

A growing number of health care organizations are scheduling appointments, managing patient records, prescriptions, and disseminating health information through online platforms that are not required to be accessible to visually impaired patients. 

Accessibility Enforcement

For those blind patients lucky enough to have assistive technology, there is no mandate to make health sites compatible to disabled patients.

The World Wide Web Consortium (W3C) is an international community that is committed to making access to the web available to everyone. W3C’s Web Accessibility Initiative provides strategies, guidelines and resources on how to make the web accessible to people with disabilities.  For non-governmental website developers these standards are voluntary and therefore not enforceable.

That’s why when a visually impaired person purchases a computer with assistive technology and she clicks on one of those websites it’s not compatible with their screen reader and magnifier and not accessible.

Non-disabled people have direct access to these same websites. They are at an advantage and can access comprehensive health care information and services, financial services, educational platforms and social networks.

The disparity that this problem creates is the huge gap between those who can see and those who cannot in regard to managing the basic tasks of everyday life.

Social and Economic Marginalization Carries On

It can be argued that the isolation experienced by the blind and visually impaired is more entrenched than racial segregation.  There has never been a high profile movement to demand solutions to the poverty and discrimination that people living with a disability experience daily. 

Large numbers of the disabled live at or near the poverty line and can’t afford the available assistive technology. Computer systems that include screen readers, can cost upwards of $10,000.  Not all visually impaired individuals are eligible to receive purchasing assistance from state vocational rehabilitation departments.  

Increasing internet-based access to the most fundamental services would certainly facilitate a demographic shift, economically, educationally and potentially impacting health outcomes.  

Making the Internet Accessible

One solution might be to offer tax credits as an incentive  to tech manufactures to integrate assistive technology into off the shelf computer systems. This incentive would increase access to technology for the visually impaired.

As a society, we may be forced to address the disparities created by  a failure to ensure access to online services because of the increasing prevalence of disabilities attributed to the aging population in the United States. The question is how do we successfully design health care strategies that are accessibly to all, not just the advantaged?

 

What Would #ThisNurse Say? Nurse Pham: You’re a Hero. Media: More Nursing, Less Puppy Love.

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRNcalllightI think it’s safe to say that most of us can detect when the media is spinning a story. Whether telling or being told, news is often flung wildly across print, television and social media at the whim of the deliverer. We all know the power the media has to shape the way we think, just as much as we all know what to expect when we turn on Fox News.

But since we’re rarely included in the media, nurses may not realize that this week, we became its biggest victim. Our poster child? America’s first recipient of transmitted Ebola, Nurse Nina Pham of Texas Health Presbyterian Hospital in Dallas.

On Tuesday, likely to quell the anger of nurses over the CDC’s wording on the cause of Pham’s diagnosis, the Times ran the story, “Ebola Puts Nina Pham, a Nurse Unaccustomed to the Spotlight, in Its Glare” Written by Jack Healy, the story came nicely packaged with a photo of the young, beautiful woman on her cell phone, assurances of Nurse Pham’s stable state of rest, that she checks her charts twice, and that her little dog is safe.

To pick one story on this evolving topic is difficult. But I believe a quick dissection of the Times initial coverage of Nurse Pham is most vital to the nursing community in our current state of Ebola dialogue. With it, the media has stuck us in the age-old angel corner, and in doing so, largely distracted us from spinning our own evidence-based, intelligent tale.

Here’s where I think we, the expert nursing community, went missing in this piece, and what we might have added by way of a credible, clear and constructive defense to Nurse Pham, and an attempt to gain control of the dialogue about nursing in the shadow of Ebola.

Nurse Pham is a professional.

The Times cited a friend of Pham’s, a Jennifer Joseph, titling her simply as a former colleague. Joseph later outs herself as a nurse, saying that Pham helped her orient to the ICU. She also speaks on Pham’s character, which is the only instance when the Times spins Pham’s breach – she’s a conscientious, nice nurse, how could have…made a human error?

Not once does the Times speak of Pham’s experience as a nurse. They disclose that she graduated from an accelerated degree program, but they do not tell the public what this means – that this is the equivalent of a Bachelor’s degree. No quantification of her experience as an ICU nurse is made.

How different the spin of this article would have been if the reporter included the remarks and expertise of an experienced nurse to address Pham’s ICU experience, professionalism, and the role that the hospital played – or did not play – in preparing their nursing staff. This missed media opportunity likely did little but distract a public already entering mid-panic over the competency and protection of its most trusted profession.

Whether Pham has little ICU experience, or she is a nationally recognized critical care specialist, a discussion of her professionalism as a nurse by a nurse, remains an opportunity too valuable to miss. Without our voices, the Times spins us into the numb land of human interest – beautiful, young, saintly nurse turned patient – and away from a much-needed dialogue on what makes a nurse credibile, and what a credible nurse actually does at the bedside.

Nurse Pham is a victim of poor training.

As an experienced MICU nurse who cared for critically ill patients during the deadly 2008 H1N1 epidemic, my first question about Nurse Pham would have been: “What was the protocol that she breached, and how did her hospital prepare her?” Instead, this article had me wondering what might happen to her dog. By focusing on personal attributes, the media created a cause, but with it, a distraction. Now, days and diagnoses later, the truth of the hospital’s state of unpreparedness has finally surfaced via the voice of an angry nurse employee.

Whose fault is this initial soft spin? In my opinion, the nursing profession should shoulder part of the blame. Barring a very outspoken nursing union and a lot of social media drivel, many of us are not asking critical questions to critical media contributors. What exactly happened in that Texas hospital? Did the journalist reach out to Texas Health Presbyterian Hospital in Dallas and ask to speak to an expert infectious control nurse or nurse epidemiologist? Are these nurse experts reaching out to the media to pitch themselves as experts?

Likely, the question we all want an answer to – “What went wrong?” – will not be subject to conjecture for quite some time. Our outside perspective but inside nursing knowledge is direly needed to spin nursing’s take. By asking about the nature of Pham’s training and her employer’s lack of preparedness, expert nurse voice could act as the vehicle for shifting the Ebola debate towards the discussion of a systems-level problem of neglect towards nurses, that existed long before the virus entered our land.

Nurse Pham should be our example, not our media darling.

While my thoughts go out to Nurse Pham, who is undergoing what I can only define as every nurse’s nightmare, I think we do ourselves a disservice as a profession to jump into the human spin of her story. As American Academy of Nursing president, Diana Mason aptly said to NPR this week, “If your hospital’s not prepared for Ebola, the nurses will know it.” When we focus on fluff, and do not speak critically with the media on the details of our care, we keep vital, nurse-specific observation points from policy makers.

Want the CDC to change their PPE protocol? Stop threatening to strike for specific items and instead study their recommendations on PPE procedure. Look at pictures of Ebola in Africa; recognize its theft of humanity, and that it is a threat to many more lives than just our own.

Then, talk to your media outlets and spin nursing’s story in ways that count. Talk about your experiences with PPE training, now and in the past. Call in to your local radio station about the quality of your PPE at work and what it feels like to wear it – in an unbiased, factual manner. When you see a CDC policy that makes you scratch your head, refrain from tweeting it with a thoughtless comment, and look into it. Could you explain it better?

Ebola is nursing’s tracer-test – it exposes just how unsupported, and yet just how crucial we really are to America’s health. We should move away from blanket statements based in fear and not fact. Using Nurse Pham as our example, we must make ourselves available to the media as the experts that we are, demanding the policies necessary for vigilant Ebola care, while offering our expertise for their creation.

New Thursday Column: What Would #ThisNurse Say?

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRN

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I love the New York Times, I really do. Above the shower in my tiny, windowless bathroom, hangs a clipped front page from March 17, 2004. A woman walks in front of a bodega’s flower display as snowflakes fall. She holds a cell phone, and like a true New Yorker, goes unphased by the flowers, the snow, and their ironically beautiful combination. I loved this photo then, when I was in college in rural Ohio – it was the personification of a city I knew I was destined for. I love it now, as I walk the same streets and continue to read the same paper.

But the longer I read, the more I realize that my beloved Times really doesn’t love me back. Sure, it loves me, the student, the reader, the art lover, and the citizen. But my New York Times doesn’t love me, the nurse. Day after day, I open to stories about topics that lead directly into the world of nursing – health care policy, Ebola coverage, even business innovations –with word after word, and quote after quote blatantly devoid of the opinions of our country’s largest and most trusted profession.

An article in today’s NYT discusses Ebola preparedness in New York City hospitals. Although “nurse,” and “the nurses,” are used in descriptions of personal protective equipment (PPE) upgrades, nurse opinion is not cited. An opportunity for public education on the risks of transmission is missed (arrow) – a perfect place for an experienced nurse to explain the process of donning, wearing, and removing PPE. The only nurse quoted in the article remains unnamed, described as, ” not authorized,” for identified comment, despite assumed position as a hospital employee.

I’ve written a few reflections about this absence on my own blog, and for HealthCetera. Many center around the seminal book, From Silence to Voice, where authors Bernice Buresh and Suzanne Gordon discuss the absence of nursing voice in mainstream media, and why this is a problem in dire need of a solution.

I believe our absence in papers like the Times says much more than any misquote or unauthorized sound bite we might fear – our silence infers that we, the nursing profession, has nothing to say. But from my experience at the bedside and in the policy world, I know this isn’t true; nurses have more to say that matters than most partners in health care teams. Maybe we just don’t realize this?

So, from now until I start seeing active solicitation of expert nurse opinion in my daily paper, I’ll write a column here on HealthCetera. This column, called, “What Would #ThisNurse Say?” will take one news article each week, and discuss the absence of nursing voice within its contents. It will then shed light onto what the article might look like with the presence of nursing voice. I’ll also give you tips on how to reach out to your local papers as a nurse expert, who to talk to at work to get your expert-quotes approved, and where to go when you want the inside-scoop on news from a nursing perspective.

Nursing is big, but we’re often ignored. We’re vital, but we’re always fighting replacement. Perhaps it’s time to enter into the media arena as the experts we are in the bedside arena – one newspaper quote after another. Join me every Thursday, here on HealthCetera, to do just that.

Healthstyles Special

WBAIWe are excited to tell you about a special program we’ve put together for Healthstyles tomorrow, Thursday, October 9th, from 1:00 to 3:00 on WBAI, 99.5 FM  in NYC (wbai.org). It’s part of the station’s fundraising marathon, and we hope you’ll tune in and make a donation during our time slot by calling 212-209-2950.

We lead off with a discussion about the Affordable Care Act–what’s working, what’s not, and what can help to improve health care in the state and nation. NY State Assemblyman and Chair of the Assembly Health Committee, Richard Gottfried, joins us for that discussion and talks about a bill he has sponsored to adopt a single-payer approach in the state.

Barbara then interviews political cartoonist Jen Sorensen about  health care reform. She talks about a cartoon about health care reform that we’ll be offering as a premium to listeners who make a qualifying donation to WBAI during the program.

You can listen to the interview JenSorensen

**Finally, we’ll end with Barbara’s interview with founder and CEO of Hip Hop Saves Lives, Chad Harper, about his advocacy, education and work with youth to promote an understanding of and activism around some of the important health and social issue of our day.

**(due to scheduling issues, this interview did not air live) You can listen to the interview with Chad Harper HIPHOPSAVES.

So it will be a lively and rich program with diverse voices. Tune in and support Healthstyles tomorrow from 1:00 to 3:00, on WBAI, 99.5 FM in New York City.

Diana Mason and Barbara Glickstein, Co-producers, Healthstyles

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